Questions to ask MO about this ILC

warriorwannabe
warriorwannabe Member Posts: 66
edited March 2016 in ILC (Invasive Lobular Carcinoma)

Since ILC is the sneaky, not so common BC, how can I be sure the MO is treating it correctly? In your experience (which I value so very much as this board is a Godsend), what should I ask the MO?

warrior wannabe

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  • dtad
    dtad Member Posts: 2,323
    edited March 2016

    make sure you are being seen at a university based teaching hospital. Where you are seen is a huge piece of the puzzle. Good luck and let me know if you need help finding an appropriate facility.....

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2016

    Do your research as well, and ask your docs about any potential treatments that are supported by scholarly, current research. Ask them how many patients with ILC they've treated; what was their success,, do they go to regular conferences where they'd be exposed to treatment options for this subtype of BC, etc.

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited March 2016

    My Onc told me at the outset that treatment was the same for IDC and ILC???? Not what I've heard at all.....My choices are very limited here but feel like I need to look up another opinion somewhere.

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  • warriorwannabe
    warriorwannabe Member Posts: 66
    edited March 2016

    Hi Artista - Im with you! it's hard to go up against doctors isnt it? If I say "I read online that........." they discredit it. Maybe dtad can help you find a better place?

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited March 2016

    Warrior, I did go up against her twice when she contradicted me about two medications and I proved her wrong. The second time on the phone call I was teary because i was mad!!! And we had a little chat and she apologized and our relationship has been better since then. But I am still interested in more information so will still seek out another opinion just because.....

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  • Girl53
    Girl53 Member Posts: 225
    edited March 2016

    Want to chime in re: ILC and oncology, because I saw my MO this week after finishing radiation about a month ago.

    In context of general conversation about ILC (mine was tiny and not aggressive), she remarked that ILC tends not to be as responsive to chemotherapy as does IDC. I mention this because I've seen this point debated on this board before. My doctor is with John Hopkins -- I was referred to her by the chief of breast surgery at Hopkins in Baltimore. So it seems to me she is trustworthy. Just wanted to cite this on this thread, as I've seen this question asked before.

    Hoping for all the best for you. BTW, onc I saw this week was third one I've been to...the first was rude and dismissive; the second wouldn't return my calls. Whew! Long road at times.

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  • mefremov
    mefremov Member Posts: 2
    edited March 2016

    the idea is that it likes covering surfaces like pleura and peritoneum and if hormone therapy is used, with so many options for the estrogen receptor, there is a real quandry where to start. I would ask about prevention of bone loss with the AIs, and ask about the bone protective agents like zoledronic acid versus prolia

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  • Sunnyone22
    Sunnyone22 Member Posts: 191
    edited March 2016

    mefremov - I don't exactly understand what you alluded to in your post when you said "and if hormone therapy is used, with so many options for the estrogen receptor, there is a real quandry where to start". Would you mind ela borating?

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